Tom Whitmore has been administering a CaringBridge site for our friend Stu, who suffered a serious stroke in June. Tom works with Stu’s life partner to craft the web updates. After he posts the news, he monitors comments from the friends and family who read the site.
Listening to Tom talk about this work made me realize that he is discovering many of the principles of good crisis communications — something that very few people are trained in. I asked him to share his observations.
Tom writes:
It is my sincere hope that you will never need to use CaringBridge. It’s a web-based service that helps the families of people who’ve suffered a medical crisis set up a simple website and blog to keep friends up-to-date. While many people are on Facebook these days, there are still quite a few who don’t care to join. Having a single place like CaringBridge where everyone can check to see the latest news about an ailing friend or family member is really useful.
I’ve recently been serving as the administrator of a CaringBridge site for my friend Stu, who had a severe stroke in mid-June. While the system is technically quite easy to use, it turns out that the communications work itself requires some thought. On one hand, I’m serving an audience that has lots of questions and comments. On the other hand, I’m assisting Stu’s partner and need to be attuned to her perceptions and honor what she wants to communicate and when.
After three months of working with CaringBridge, I’ve come up with a five tips that I believe can make the service slightly easier for other people to use. Karen asked me to share them here at WriterWay.
- Have a CaringBridge account set up quickly after a medical catastrophe.
- Have someone other than the primary caregiver administer and manage the site.
- Update the site’s journal regularly and honestly.
- Update the original information (on the main story page) to reflect major changes.
- Keep your audience in mind.
For those of you interested in more, I’ll expand a bit on each of the five points:
1. Set up a CaringBridge account quickly after a medical catastrophe.
Speed is important. People want to know where to go for information, and having a CaringBridge site ready quickly makes a big difference in whether people will go there for information. I’d guess the window for getting a site started is between an hour and 72 hours after the event. Don’t wait to be certain whether you’ll need it: if the person is going to be in the hospital overnight or longer after an emergency, that’s a pretty clear indicator that people will want to know about it. And if the condition is imminently life-threatening (certain types of cancer, for example), you’ll want to start rallying support.
2. Have someone other than the primary caregiver administer and manage the site.
The primary caregiver is going to have his/her hands full dealing with the medical situation, and perhaps insurance issues and visiting relatives. Friends will ask what they can do to help. Someone with a combination of computer skills and people skills is the ideal person to ask to set up a CaringBridge site. CaringBridge is pretty easy to use for anyone experienced with online groups. In fact, if you’re reading this, you probably have the necessary skills to set up an account.
3. Update the site’s journal regularly and honestly.
People will come to the CaringBridge because they want to know what’s going on. A regular schedule is very helpful. I posted daily during the period when my friend was in Intensive Care from the stroke; when he moved to rehab, I noted that the posts would get less frequent. When he had to go back into the hospital, I increased the frequency. And if something major happened, positive or negative, I’d stick in an extra post.
It’s also important to be honest. If you don’t know something, say so. Things are going to be uncertain more often than they’re going to be clear. People still want to hear. And if something bad happens, say so. Don’t hope it will go away if you ignore it. It may go away (which gives you good news to post), but your talking about it won’t hasten that or give it extra power.
4. Update the original information (on the site’s My Story section) to reflect major changes.
A CaringBridge site has a top section called “My Story” where you can write a very short summary of what’s going on. Remember to update this summary when something major changes. I posted that my friend had had a stroke: two weeks later, folks coming in to read what was happening thought that this meant he’d had another one. Oops. Adding the date took care of this problem. Saying when he moved to rehab also helped keep things clear. This section is limited in length to a few hundred characters. It’s not Twitter, but it’s a place to be very concise.
5. Keep your audiences in mind.
If you’re the designated manager of the site, you have two very important audiences. The first is the primary caregiver. Your goal is to help him/her get all the information into a small package, figure out what her/his friends will want to know, and write it down. There will be things that it’s not appropriate to talk about (reactions of some visitors, other people’s fears, and such). Talking things out with the primary caregiver also helps him/her gain some perspective on what’s going on. Don’t be afraid to ask “How do we want to present this?”
The other audience is the people who want to find out what’s going on. Tell them as much as you can without either writing too much (1000 words per update is Too Much Information unless there’s something complex and specific to say) or saying inappropriate things. Sometimes you should push the primary caregiver to say a bit more, but don’t insist: S/he is the one who has the most to say about what happens on the CaringBridge site. Remember to appreciate people who give you feedback about how the site is going, and don’t reject ideas that might improve your site management. Sign your updates so people know who is making the updates. Be accessible. Read the Guestbook comments to make sure no one is misinterpreting your journal posts.
It takes a village to deal with a major illness. If you’re managing the CaringBridge account, you’re the village reporter. It’s a serious and rewarding job.
Very well said.
John, I think you were the person who first made us aware of CaringBridge, some years back. Thank you!
Wow I forgot that.
As one who has been reading the site Tom refers to here, I wanted to say that I am very appreciative of his caring and attention to doing it right. As a user, one can set a flag to be notified via email when new updates are posted, so I see every update and know how much effort goes into this. One other point to add. When you set up a CaringBridge site, you have a choice of whether or not to require users to register and log in. I understand the desire for privacy, but making that choice presents a barrier for those who are very careful about what sites they share information with. I have two other friends who feel that way and so have been excluded from participating. (I’ve been keeping them updated when there are major changes.) Just something to consider if you ever find the need to set up your own CaringBridge site.
Leslie, you raise an important issue. I checked the CaringBridge site and was impressed by the strong, clearly-stated privacy policy they have. They have garnered endorsements from some of the top consumer sites for their privacy safeguards. And they ask for the most minimal information during the registration process. That said, we live in times when nearly any website back-end database can be hacked. I take comfort from a practical observation: Hackers go after sites where there is lots of money (banks and other commercial entities) or secret information (government agencies). CaringBridge.org seems quite unlikely to attract that sort of interest.
Karen, I agree with you, and you see that I had no problem creating an account at CaringBridge for myself. But it remains a fact of life that some people just won’t do it, even if we might think their fears are unfounded. On the other hand, if you make the site open, I could imagine that there might be people who would read strangers’ sites and try to profit from the information there. So it’s a dilemma either way.
Tom, you and Andi have done a great job keeping Stu’s friends informed. Thanks VERY much.
Tom, thanks for the tips and we appreciate all the work you and Andi do on keeping us all up to date.
Noticed that if you cut/paste from MSWord the you chew through the max character limit faster. Better to tune in Word the cut/paste into notepad then out of notepad into CB.
Curtis, that’s a great point. Tom has been writing directly in the Caring Bridge CMS, which I don’t find particularly user friendly. I write all my drafts (for other sites) in TextEdit, which avoids pasting in all the hidden Word code. Thank you for your tip!
Great tips, all.
I have been posting on Caring Bridge for 4 months and am quite frustrated that all the formatting was lost in the upgrade. I’m interested in TextEdit but cannot find a reference. Can you point me please?
Thank you! JG
Thanks for this information. Unfortunately, we now have a situation where we need something like this, and I will definitely take your recommendations to heart.
Glad this is of use. Tom and I are interested in the ways that communications principles we usually think of in terms of professional work apply in our personal lives as well. In difficult health situations, having a good communicator who is one step removed from the process can make it easier for a family and for friends who want to help but aren’t sure about what’s needed and when.
Best of luck.